Report transcript in: Sal's story - Narratives of the Global Impact of COVID-19

Please Report the Errrors?

Can I get you to introduce yourself, please?

Yes, I'm Baroness

Salton.

And, um, I am the Lib

Dem Frontbencher for health and social care.

I am also disabled.

Bank sell. So what does the feminist do

that?

Well, the House of Lords is the second chamber in our parliament system.

But we're very different to MP s.

We spend most of our time going through legislation in detail.

We call it scrutiny as the technical word.

Uh, but I spend my life reading,

um, proposed legislation, proposing amendments,

talking to other members of the House of Lords and then

making sure that ministers understand where our concerns are.

I think so.

So can I ask you,

what impact did the Covid pandemic and the lockdowns

have on your life as a disabled person?

I'm disabled by my disease.

I have a number of autoimmune diseases,

and I mainly use a wheelchair and I can walk a bit, so I use a stick as well.

Uh, but my main problem for covid is that I'm on severely

immunosuppressing medication the whole time.

So I was in that group of people

described initially as vulnerable and then clinically vulnerable,

and then I moved into the the Group of the Million

who were eligible for early vaccinations and and other medication.

And although I I

don't I'm not one of the half a million people with

blood cancer and others who are still shielding at home.

I only go into work if the numbers the covid numbers are below a certain level.

And I will talk to my consultant or, um, rheumatology nurse about what?

What I should be doing.

Thanks. So

can I ask you about what impact did it have on your work and what

was happening with you at the time of like in terms of work wise?

But it became evident to me at the beginning

of February that things were beginning to happen.

And at

that point,

my work life changed completely because the point

about being a frontbencher a spokesperson for my party

is that with anything new, you have the responsibility to keep yourself informed.

And I was talking to my local director of public

health who was explaining after that spring half term,

why they suddenly saw a spike after people have been away for half term.

But nobody knew at that point exactly.

how to treat it because, you know, 2020 that early we didn't know.

Um The big effect, though, was as cases started to build up,

was preparing for what everybody knew would be a pandemic.

And in my personal life terms, that meant, I mean,

I luckily had an appointment with my consultant anyway.

But I talked to him very early on about what I should do to keep myself safe.

And I felt it was important to make sure that any legislation that happened

also reflected not just coping with people who'd got it in hospital,

but how it was going to affect other people's lives as well.

And

and then

the cases went above a certain number,

and I had to dip out.

There were no arrangements for, you know,

remote zoom contributions to parliament.

So I'd done a lot of work on new emergency regulations,

and whilst at that point we just said, Look, we've got people becoming ill and dying,

we've got to do something

for us in Parliament, the real horror was there was no time,

everything was introduced, and then we were asked to comment on it,

so we always felt we were on the back foot,

and I'm afraid that still continues today.

I mean, we're not in the same emergency, but two weeks ago,

we were debating a regulation that the government had introduced

the day before it came into effect,

and we didn't talk about it for two weeks.

So from my perspective, the worry is we can't do our job properly

and things got through that shouldn't have got through.

Can you tell me a bit more

about those things that got through? And also

you talked about the shielding group and, you know, being on the back foot.

How do you think people with disabilities are included in some of those decisions?

Uh, well,

some of the things that got through was the not understanding people in social care

or vulnerable people who had not at that point even been asked to shield.

That happened, I think

early April mid April,

um, and making sure that they have protections, and it was also very evident to us.

I mean, most, most of us in

in in in Parliament and have somebody who is has social care, whether it's, um,

an elderly person

or an adult with a disability who needs social care support,

whether domiciliary care or or whether it's it's living

in a a care environment or even sheltered accommodation.

And they were just forgotten.

So some of the real horrors that went through was

the powers for bodies to be able to commandeer things.

And

I was absolutely horrified when I heard

that consignments of P PE that social care providers had managed to buy

from abroad were being commandeered for

hospitals because they didn't have enough.

So when Secretary of State said, you know,

they'd thrown a ring of I can't remember the the words

he used but a ring of security around our care homes.

I knew the opposite was the truth, and

my role as soon as we were able to contribute on Zoom to Parliament

because we were all in lockdown was to say it loudly and clearly.

And I did,

uh, but the other thing I did was to challenge the shielding guidance because

if you looked at the guidance properly,

it was telling those of us in the shielding group that we had to be very, very careful.

But the support mechanisms were just not there

to support that at all.

So, for example,

it was only the person it wasn't their family or immediate contacts.

There were very few arrangements for work,

and so my role was, you know, somewhat tediously,

to go through these things every time they were published.

Then go and speak to the minister.

But sometimes privately and then obviously in public, on on the Lord's, uh,

parliamentary zoom,

and it was utterly relentless. I mean,

we have

Usually we'll do as a parliament in the House of Lords.

We'll probably do about 15 regulations across the entirety of government.

For the first two years of covid, we had 400

just for health,

just for health.

So it was relentless, absolutely relentless.

And in terms of shielding,

um,

one of the things that became clear was that as people understood what was going on,

the NHS needed to change what it was doing. And the initial

every everything seemed to be designed to protect the NHS,

which

was completely understandable because we didn't want the NHS to fall over.

But it took even the NHS a while to understand the consequences elsewhere.

So I still speak to this day about what

the arrangements are for people who have vulnerabilities,

uh, for people who live in social care.

Um, because

part of the problem in our NHS at the moment

is that we've got over 5000 patients with covid in hospital

and a lot of them are vulnerable.

They have got immunosuppression, immunocompromised,

and yet we're still having trouble being heard by the government to make

sure that whilst we hope covid is on the decline for some people,

it isn't

But many people who shield still now to this day because they have to tell me

that they fear for their lives. And they're right to

I had a very dear friend who, uh,

had an autoimmune disease who had a lung transplant which went extremely well.

This was in the first SEC first lockdown, second lockdown

went home and unknowingly, his carers brought in covid and he died,

uh, which was awful and

almost unpredictable because you can't tell often in the

early stages and that that carer was probably devastated.

But the problem is, we as a group remain vulnerable and will do so. And until the NHS

and government understand that they have a duty

of care towards this group of people.

We will still continue to see people either becoming ill and dying

or having to live a completely different life losing their jobs,

not being able to see friends and family.

And that really shocks me.

Can I ask you? Uh,

so I I'm just wondering if you have a view on,

Why do you think that some of these decisions

have been made? Do you have an opinion why some of the decisions were made?

So I think at the start it was a genuine lack of understanding.

And,

you know, I think we all have to

understand the

the nature of that first pandemic wave and then

the lockdown and how everyone was trying really hard to

to try and make things work.

But that became unforgivable After the vaccination

started to arrive and they realised within

two or three months that that particular

group of shielding people were not protected,

they couldn't make antibodies and therefore they were not protected.

And that, for me, is the boundary. So

2020. Just trying to think it's the end of 21 wasn't it?

And, uh, people were beginning to have vaccinations.

I still can't get ministers to hear it.

In fact,

it's worse now than it was before ministers

stand up and say regularly in parliament.

Covid is over. Covid is over. No, it's not.

But I think there is a bigger issue,

which is about how the disabled are perceived and

one of the things that shocked me most.

And obviously, I mean, I use a wheelchair in Parliament,

a very visible disability.

I sat and watched

peers who are covid deniers who thought the vaccination was unnecessary.

Stand up and say,

Well,

you know, we're gonna lose some people if they're vulnerable.

If they're disabled, that's just life. And I thought,

They're talking about me.

They're talking about me

and it.

It's bad enough when people generalise,

but they had people who they knew

were in the same debate as them who they whose lives they were utterly dismissing.

And I see that in lots of other ways, not covid ways at the moment as well,

about that attitude towards disability benefits and not operating.

Um, it, I mean, it's it's appalling, absolutely appalling,

I think so. It's and it just sounds

really heartbreaking to hear that these things continue and and

I'm I'm wondering

you, you're sort of touch on this. So

there is lots of talk about a post pandemic world.

Um, what does that feeling look like to you?

One as a disabled person, but two as somebody,

um, you know, working in the House of Lords and as

a person championing in sort of disability rights issues.

Well, I think the pandemic as with the Spanish flu outbreak in 2017 2018.

Sorry.

Let let me start that answer again.

Um,

I think that the pandemic, as with the Spanish flu outbreak of 1917 1918,

um,

stopped everything in progression terms.

And the real worry to me is that it all went backwards to life beforehand.

Um, I came into the House of Lords er very early in 2011, and, uh, in my wheelchair,

I sit next to Tani, Grey Thompson

and to Jane Campbell.

I mean,

you know how inspirational to sit beside those two wonderful campaigning women.

And we debated a lot both publicly and privately about 2012,

and the Paralympics about how were things going to change?

And that's my yardstick. Because the public think things did change,

but they didn't

there were some improvements.

I mean,

I I I was on the Lord Select Committee

on on Disability looking at the Equality Act 2010,

and and, um, whether things have been brought in and some of the things have changed,

but far too many have not.

And I know that from my own lived experience, um uh, the the current train strikes.

I mean, I I say to ministers,

I'll be saying it again tomorrow to the transport Minister.

You know what?

Whatever the merits or not of of the pay strike, it's not just about pay.

It's about ensuring that trains are accessible to everybody.

And I have been left on trains. I have overshot the the station because

the station I left from didn't alert the station. I was arriving at that.

I was there and it was too late.

Um,

I have been abused on trains by individuals.

Um, British transport police found some CCTV but couldn't find the culprit.

And I know that is the lived experience of far too many people with disabilities.

I am fed up with being told when I have to go in

early that people like me should not be travelling during the rush hour.

It it is there in every part of our lives, and it's so wearying.

And when you tell the stories people say, Oh,

that's really shocking that shouldn't happen.

But this isn't unusual.

It really isn't unusual. So

I tend to speak up if I can about things as they happen,

because I actually think that I have a responsibility in my role to say, Look,

this still isn't working.

You've got to change it and make it work

really important. And

I was wondering if,

um so the, uh, the in during covid there were things like the care act easements

and then they would do not resuscitate orders.

These things that surprised you or

yes, they do not resuscitate orders. Deeply shocking.

We had actually had a debate in the Lords the previous year

about, um, how how they worked, what was ethical, what wasn't ethical.

And, um,

I mean to be to be fair,

ministers didn't have nothing to do with this. This was it tended to be some

misguided people in areas mainly GPS,

who were struggling under the weight of things.

But the problem is, it wasn't stopped fast enough

and I I think it was appalling that anybody could just start applying,

um, DNA PC r s, uh, without reference to the individuals,

or if they didn't have competence, their families just happening automatically.

Um,

I think one of the most shocking things about that first email

to people who had to shield right at the start was,

Please think about whether you want to go to hospital at all or not,

or what you want to happen in the event of you catching covid.

Do you want

essentially have treatment?

Uh, and that really made me think very, very carefully.

Um,

and unfortunately,

doctors decided some a very small number of doctors decided,

probably misunderstanding the rules that in a crisis they were able to do that.

But that was stopped, and it was stopped pretty quickly once it was discovered.

So I wanted to explore with you.

What do you think we've learned? Um,

from the pandemics and lockdowns.

Hm.

Um,

so I want to go back to Spanish flu very briefly. There is a brilliant book,

um, published in 2016 called Pale Rider,

which is written by, um, an historian of medicine

and in the last two or three chapters.

She looks at the next 10 years

and it's very interesting.

Um, people's deaths by heart, disease and other and respiratory disease

continued high for years

and it was probably the equivalent of long covid.

But she pointed out that all the benefits that have

come in for looking after people and particularly the vulnerable

just went straight back

to how they had been before.

And I think that the thing that I have learned is that even

though I've been saying this loudly for the last year we've got to learn

is that both the health systems

and government have all gone straight back into

the old ways and it profoundly depresses me because

we know that we are more likely to have pandemics because we're in

a global world where people travel much faster than they ever used to

and we have to be prepared.

So I hope the pandemic inquiry is going to

provide some good results, but that's not good enough.

The thing is that the entire system and attitude towards pandemics has to change,

and in particular it has to change towards disabled

people and the most vulnerable in our community.

What would you

like? The covid inquiry to hear. So

what are those key things you would like the covid inquiry to hear.

Well, thankfully, they are going to hear the story of the,

um shielding people immunosuppressed or immunocompromised,

and And look at that and look at the decision making process.

Um,

I hope one of the things that they're going to be looking at, I'm not sure they will,

is how particular groups of people's lives were affected,

which would include disabled people who may not have been,

um, immunocompromised.

Um,

it's an enormous,

Um,

it's an enormous task. I think one of the things that

mattered for me a lot with the correspondence I was getting

was people stop thinking that reasonable adjustments were

appropriate because once you're in an emergency,

you just do what you have to do.

And I think from some of the the the social media

groups I'm on for people with my sort of condition,

I I'm saying that that's changed, and I do hope the inquiry will start to look at that,

but in a much more fundamental way.

It's really got to look at the breakdown between

the NHS and social care because the real scandal

and that will come out in the in the inquiry is what happened to people in social care,

Absolutely appalling.

And it it has to come out in detail and lessons have to be learned.

And I think to be honest, it's much more about the way

we view social care in this country.

And governments of all colours over the last 2 to 3 decades

have stopped thinking about how social care works and how it is funded.

And it's being blamed for systemic problems about funding and about the

way people operate and the way the NHS and social care interact.

If the pandemic inquiry can do some pointers towards that,

that starts to change that attitude.

It will be good.

Thanks. So, I, um, the other day heard you talking about long covid.

Um I was wondering if you could share with me, uh,

kind of what's what's happening?

What what kind of debates are happening and you're involved in around

long covid and And, Yeah.

So there are quite a lot of questions still being

asked in both houses of Parliament about long covid.

Um and indeed, we had a debate.

I think you may be referring to the the debate we had, um, about three weeks ago.

Now, where, um, we spent,

um We spent an hour with various speakers going into detail,

including some very senior doctors in the House of Lords also saying,

explaining how things are broken down.

Uh,

and I I do think that as far as the

minister and the Lords are concerned that that was heard.

Uh, my worry is,

I'm not sure the secretary of state is likely to do anything at the

moment because he is one of the people that keeps saying covid is over.

But long covid is not over as either. Not just covid but long covid.

I'm vice chair of the all party group on a coronavirus, and we take evidence.

And we've recently published our report on long covid.

Um which is, I think,

our following our third session over the last

18 months with long covid patients and with doctors

and with health and safety at work people as well.

Uh,

and that what we're hearing now is that many people who

are still really struggling with long covid are losing their jobs.

um I've seen that as many as 400,000 NHS staff have got long covid.

I have a friend who is a AAA senior midwife who has lost her job through long covid.

And we know we are desperately short of midwives.

I'm really worried that some of our public services are not trying

to either treat people with long covid properly or build up the NHS to

make sure that they don't lose that expertise and find part time roles,

slightly different roles where their expertise can be used.

Uh, it's really, really shocking.

Thanks.

So, um, I was wondering if you could share with me your experience of being involved

in the, um, working group for the a p p.

G on adult social care and what that felt like during covid.

So all party parliamentary groups are brought together by people.

Um, have to have MP s and members of the House of Lords in it.

When those people have a particular interest,

uh, that they share and the adult social care group, um,

was formed in order to make sure that parliamentarians were listening to

and hearing the needs of people in the adult social care sector.

And, um I mean, it's been going for a while beforehand,

and it and it was it was extremely useful because of the debate.

You know,

I just referred to about the crisis that we've got in social care at the moment.

But during the covid pandemic, we started to meet weekly on Zoom.

In fact,

we were meeting weekly on Zoom before parliament got

its act together to work on Zoom itself.

Uh, because it was so important. And it was through that that

myself and other parliamentarians were able to hear

frequently weekly updates by email on what was going wrong

and that enabled myself and other parliamentarians

to ask ministers really difficult questions,

really difficult questions.

You know, I I referred earlier to the consignments of P PE.

I mean,

the minister was shocked when myself and and one of

the other peers on the group said to him,

We we're hearing this is happening.

Please, can you find out and stop it?

the all party parliamentary group,

adult social care provided a vital role to make

sure that a sector that isn't normally heard in Parliament

I mean, there's a AAA group of us who speak about it often,

but it's not generally there.

But during that pandemic the voice was absolutely vital.

And we heard from all types of providers

across the board,

whether it's from individuals with their own p

a s through to charities co-ops right through

to small private providers to the mega providers

all coming together for one particular thing.

And that was to keep their clients safe

and find out what on earth was going on with the pandemic.

So it was a privilege to be part of it, and I'm still a part of it.

And I you know, I I I enjoy it.

I enjoy the the interactions,

even though sometimes it can be pretty hard listening,

definitely,

and

myself and Sally being people that were in that space, we've lived experiences.

It felt very different. It felt like,

um,

no other kind of co-production or spaces we'd

been in before because it was very intense.

And we had met so often,

Um,

I was wondering about

Do you have anything else you wanted to

share about your experience of the covid pandemic?

Um, I'm trying to think of just just one thing. I think

The hardest thing is that I have three grandchildren,

the youngest of whom was born in the summer of 2019,

and

I still have to be careful about when I see them.

Um, so this year I've decided that, you know,

I'm going to be with the family for Christmas, first time in three years,

but I've also said I can't eat with them. I can't take my mask off for that long

so I will see my grandchildren this Christmas. But I cannot sit around and eat

with them. I'll have to be in a different room

and

it's a lived experience. I I'm not alone.

I know many other people who won't even feel that they can go to see their family.

But I've been watching the numbers.

We're only a few days away now, and I think I can probably do it that way.

Missing seeing your grandchildren growing up or

your Children going through life crises where

you would normally have been able to see them physically and do things.

It's it's affected me and will affect me for the rest of my life.

I'm I'm so sorry to hear that, and

I think so. many people are just trying to find a way through.

We all are. I suppose the good thing is, I know I'm not alone and that there is a voice.

And there are people who are saying it loud and clear on social media

and and thank you. Anyone who's watching this? Who does that? Thank you.

I watch I speak in parliament and I will go on speaking in parliament.

But we're fighting this together.

Thanks. That's a really important thing to to hear.

And my final question, um, you might have some questions for me

is what are your hopes and futures? What? What next?

Well, I'm about to stand back as the health spokesperson for my party and the Lords.

And, um, one of the reasons for that

is that, um

I had been my party president and chair for five years up to December 2019,

which had been an exhausting job because we had three general elections

during that time and a referendum on a certain issue about Brexit

and I hadn't stopped and And when I

got back full time in the Lords, my boss, my leader, said to me in January 2020

Would you like to be our health spokesperson again? I've done it in the past.

Um, there's not very much on.

So, uh,

I I I've done three years now of of covid plus the day job part,

and I I I'll be honest, I'm exhausted.

So he's very kindly accepted my resignation,

and I'm going to the back benches, uh, and that will give me

the freedom to reenergize and the freedom to do the things that I really,

really care about.

And

disability issues. Covid long covid

working with families with disabled Children.

All of those things are my absolute priorities.

And I will be able to give them probably more attention than I have been able to

in the last 23 years.

So may I take the opportunity to wish you all the best in

your new roles or new ventures? Less, Um,

yeah.

On the backbenches and just say thank you so

much for all you've done for disabled people.

You certainly made us feel very welcome in all those calls.

Uh, well, Isaac. Thank you.

And you, I think you know how important that group is for me as well.

Uh, and and and actually, some of the, you know,

the other groups online that I'm involved with,

They really help what I do. And

being able to say to ministers I don't think you're aware

of this is is absolutely my key role in the Lord.

Thank you.

Do you have anything else you wanted to add?

Yeah.

Cool. I'll stop the recording there, then,

OK?

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Post date

18/04/2023